Collection of disorders... Vitiligo, psoriatic arthritis?
Posted , 4 users are following.
I'd love people to read this and share any similar experiences or thoughts on my condition. It would mean a lot.
Truth is, I am lost. Still chasing a diagnosis for my worst disorder, which is debilitating. Joints and tendons mainly. But before I get there, I think I have an auto immune picture to paint.
I'm a 40 year old male. When I was a teen, I had knee problems. They'd call it "water on the knee" back then, but it was chronic inflammation. Bugged me for years and got in the way of me enjoying rugby, football and taekwondo. We'll come back to joints shortly, but bear this in mind.
In early 2000s, I started with vitiligo on my genitals. The pigment is completely gone now. I no longer look like a cow, rather one of those bald cats!!
I'm moley. So much so, I have check-ups every six months. I had an ugly duckling - a highly dysplastic mole / melanoma in situ - removed a few years back. Now, with vitiligo in mind, I'm getting halos on many of my moles (I have hundreds of moles). Halos are appearing on various parts of my trunk.
I'm aware that halo moles and vitiligo are often linked and are both auto immune.
Next up, I have nail disease... Quite bad in my toenails. I have salmon patches on one big toenail, but most others look white and chalky underneath. One foot has every toe affected (left side) and one just the small toe (right side). The small toe on the right side is subungal hyperkeratosis and only last night, the nail came right off. The nail bed looks scaly, a mixture of white and yellow. All toes, even the four that look pretty healthy on my right foot, have horizontal white lines (Beau's lines, I believe) and those affected mostly have longitudinal ridges. My finger nails are okay. I've always been told it's fungus, but tried orals, topicals, of all kinds, and even removed nails and filed the skin clean. It always returns on my toes.
Another point to note... I had suspected MRSA on my right foot in 2018. Why suspected? Because I had an outbreak of puss filled nodules on the top of my foot that itched, got worse and would not clear up with two different courses of antibiotics and antifungals topicals. Could this have been psoriasis?
Leaving skin behind for a second, let's talk joints and connective tissue. I have had three knee surgeries, one hip surgery and elbow surgery, all due to ligament, cartilage or bone related problems. Truth is, it was probably all just inflammation. None of the joints operated on have got better. In fact, my elbow is awful.
I have a diagnosis of polyarticular arthritis from a rheumatologist but with no known cause. Joints affected are knees (patella), hips, elbows, lower spine, AC joint and hands. I have heberden's nodes that glow red some days.
In addition to crepitus and joint pain, my tendons snap. This is my worst symptom. Joints lock, but I know it is tendon tightness. The snap is like a loud clap, not a thud. Both elbows, both hips, even my ACL insertions into my shins crack. I has costochondritis years ago, and it flares up now an again. My heels kill me; they are bright red and I have tight Achilles tendons. The locking and snapping is severe at times. I try to keep it in, but at times I yelp, and it's a little embarrassing. I sleep badly because of it.
Some other relevant info. I have been flaring badly for about six months, funnily enough since I had CoViD. This has been an awful time. I've been fatigued, depressed and in a lot of pain. I was at the hospital on Christmas day with an eye closed over due to inflammation that was affecting both eyes. It cleared up and then moved to my feet. Right now, they are glowing and I have eczema-like lesions around the edges of my feet.
My dad has psoriasis. It's pretty much only his left elbow and left knee, but it's there and it's plaque type.
I seem to have everything for a psoriatic arthritis diagnosis but obvious skin psoriasis. I've had apparent ringworm recurring, folliculitis, but never been told any of it is psoriasis.
To add to this... I got told I had cutaneous T-cell lymphoma in 2018 after a lump appeared in my groin and other lymph nodes were enlarged. Weeks of stress and preparing for battle, only for it to clear up and me be told they were wrong. Never found out what it was (I assumed a hernia) BUT.... Coinciding with my flare in the last six months, I developed a tumour on my right proximal ulna with associated axilla discomfort (left elbow, left armpit). The tumour looks like lipoma on ultrasound but it appeared quickly and it hurts. It radiates pain. There's a synovial lump below it on my olecranon. Doctors don't seem worried. My armpit continues to rage and hurts, plus it sweats and smells now and again. For info, I don't sweat much and never smell, and suddenly the armpit on the side of the lipoma starts to sweat and smell? Scans looked normal. Chest looks normal.
I'm so lost. I'm flattened and consumed by this. Maybe I have two issues. Maybe the mass and armpit is one, and it's triggering a flare of an undiagnosed auto immune condition that debilitating my connective tissue.
I just feel that there is no appetite to push for a diagnosis. Nobody wants to seem me through - just point fixes for acute problems. I never let illness get me down and never take time off work. I'm not the type that wants to be ill. However, I fear doctors think this is either all in my mind or nothing of concern, yet my body is telling my that it's under attack. I feel under attack.
Somewhat of a shameless cry for help, I know. Grateful of anyone to talk to. Not expecting a diagnosis on a forum, but I kindly ask for your support.
Thanks
Chris
1 like, 4 replies
barbara66703 chris70421
Edited
hello Chris,
You have not mentioned what age bracket you are in? just curious if some things you mentioned could be hereditary and or from accidents, or wear and tear injuries. after reading thru your post i feel you have a lot to manage at once. you also mentioned auto immune diseases, some things you mentioned are just that. try to take one thing at a time and manage each thing separately. checked your vit-D , B-12? also daily vit are important. blood tests can check for low levels . some of your diagnosis I can relate to. ive managed to cope with for years. joints replaced. also i have nodes growing on cords in my hands and feet. which can be quit painful if not treated.
good arch supports have helped and heal pain from nodes on my arch pulling the tendon attached to the heal bone called plantar fasciitis. it took many months for the heal pressure to be relieved. i stumbled upon rocker shoes to eliminate and treat heel/foot pain and knees. these shoes are a
lifesaver. if nothing else just get a pair of rocker shoes within a month you will see resuts. it sounds nuts it really helps ...what's it gonna hurt to at least try them. i keep a pair for when i have any pain issues and just wear rockers for a week or two for positive results each time., and always... always wear shoes with good arch supports never go bare foot. it is so surprising how walking in old shoes can perpetuate foot pain. rocker shoes have helped thru knee foot and ankle pain. in the meantime lots of ice to treat inflamation.
yes toenails is a fungus and almost impossible to eliminate. just keep them filed and cleaned. i use a rotor tool battery operated for nails makes it easy to manage.
psoriasis i have had my whole life. manage it with OTC coal tar creams and occlusion when it gets to severe. occasionally steroid creams. also for foot and hand gloves for nightly cream treatment keeps it at bay , available at most drug stores.
occasionally i get rib pain so severe i cannot breathe . it's when the lining between the ribs and lungs becomes extremely painful while breathing. its called Pleurisy this occurs when the pleura a membrane consisting of a layer of tissue that lines the chest cavity and a layer of tissue that surrounds the lungs becomes inflamed, causing chest pain . a round of antibiotics helps this right away.
also rotator cuff injuries and knee injuries have managed at home with care , many things work well for me. just stay away from re-injuring them . i use Mindfulness a lot...
i also have nerve pain from hip surgery in left side and shingles along ribs in back. shingles is not to severe yet. it started very young before vaccines were available as they are today. if you have not had a Shingles Vaccine do so as this can save you a lot of grief with pruritus and nerve pain.
there are many new biologic drugs that can treat certain types of psoriasis , psoriatic arthritis and RA .
laser is also available for psoriasis as well as other office treatments. a pathology report can help identify your skin issues.
many issues you have described can be treated and i hope you find some relief , hope and support. i have shared many treatments that have helped me manage symptoms described. the best thing is to stay in good body/health condition, exercise as best as possible even just walking daily is good just keep movin if you keep up your core strength then everything else will follow. a good food program is important to follow. see a dietician for what is best for you . some foods can cause inflammation and skin irritation especially. lots of info online...
chris70421 barbara66703
Edited
Thank you for your reply, Barbara, and sorry to hear of the things you also have to deal with.
I do take supplementation seriously, and have taken Vitamin D3 and B vitamins for years. I do wonder, funnily enough, if maybe you can overdo the D3 and contribute to an over active immune system, but I've not looked at any studies. Any road, my magnesium was low in a recent test, but that was about it.
I apparently have a wheat (not gluten) and citric acid allergy. I do need to work around those.
Great tips on shoes. My rheumatologist told me to do the same, or at least he said running shoes but his point being rocker toes and a supporting arch.
I'm 40 and male, by the way. I thought that was in my post, but maybe not.
Funny you mention pleurisy. I do get it and I went to A&E with it once, around the time I had CoViD. Sometimes I breathe in and my shoulder/back and front left of my ribs really hurt, acutely. It can be crippling for a very short few moments.
I'm finishing a build on a home gym at the moment, but I struggle with exercise and in particular recovery. I run a local U7 football team and if I train or referee a match, I can be in pain for a couple of days. It's crazy. I need to break through the barrier, though. Problem is, though, my snapping tendons get worse the strong I get.
Anyway, some good advice and once again, I am super grateful of you taking the time to reply.
All the best to you!
gabriel68708 chris70421
Posted
I have a stain on the foreskin similar to vitiligo, and a rather large mole similar to melanoma in the groin, I have lymph nodes all over my body, groin, neck, jaw, head, I'm still young, I wanted to know about your vitiligo that you had, how did you treat? and if there was a mole like melanoma, I'm too scared to go to the doctor, I've had the spot on my foreskin for over a year and a half, I discovered the lymph nodes 4 months ago, help me somehow help
lisa36427 chris70421
Posted
Hi Chris, hope you are still on this site. How are you doing, as i know you posted 12 mths ago. Have you gotten anywhere with this, as diagnoses, any help with pain ect? I have Psoriatic arthritis.
i am replying to you, as i have alot of your symptoms, i new what i had a long time ago but my rheumatologist would not listen. my story is very long and complicated, but now i am hopeful things will improve with my new med's. you seriously need to push your doctor and advocate for yourself. Get second opinions, another rheumatologists, push push push. if you don't receive proper treatment, you will be left with damage that can not be reversed. Just as important, i'm sure you have developed anxiety/depression from all the pain and suffering you have been going through, and from feeling you are not believed. Stress will also make your symptoms worse Some of your pain and symptoms are invisible to others, but you have alot of visible signs as well, reading your plea for someone to help really hit home as i have gone down that path many times. And if you are "labelled" in your chart, it will be even harder to get help. It is so ridiculously obvious that you have Psoriatic arthritis. you may have other things going on as well, but the majority is coming from the PSA . i was researching for some info on the internet and this popped up. i usually don't respond to posts due to the pain in my hands and fingers , but it really hurt to read as i know how you feel. With the proper medication, you can live a closer to "normal" life with alot less pain. I have found that place before, and am hopeful i will again, but the ride to get there has been painful in terms of mental and physical and exhaustion.
by the way i am female, 52, live in Canada and have been dealing with this since i was 30
sincerely,
Lisa